More support needed for those aging with autism

A think tank formed to understand the challenges faced by autistic seniors says there are few resources in place to address their specific needs.

A new report from the Aging and Autism Think Tank says the vast majority of research and programming geared toward autism focuses on children, leaving adults almost entirely out of the conversation.

The study — compiled by academics, clinicians and autistic adults from five different countries and released by Autism Canada — says autistic people lose access to key resources once they age out of childhood and contends the problem intensifies the older they get.

“(Autism) is absolutely misunderstood at a societal level, but even more concerning is that it’s misunderstood among clinicians and caregivers and professionals,” said Kevin Stoddart, a member of the think tank and director of Toronto’s Redpath Centre for autistic people of all ages.

“That lack of understanding can really do harm and affect somebody’s long-term outcome really adversely if they’re not diagnosed and supported in ways consistent with autism.”

The report suggests part of society’s misunderstanding of autism stems from a long tradition of ignoring the voices of autistic people, and calls for more proactive efforts to include their perspectives in matters that impact them.

Part of the problem, Stoddart notes, is that autism as a term is little understood outside of a childhood context.

Though autism was first identified in 1943, it did not enter the Diagnostic and Statistical Manual until 1980, according to the report. The research that has evolved over the ensuing decades and the programs resulting from it, the report said, have been focused almost exclusively on children.

Laurie Mawlam, executive director with Autism Canada, said children who may be relatively well-supported through their youth are left with few to no resources once they turn 18.

Options are more plentiful for adults who have an intellectual disability, but Mawlam said autistics who do not are often left particularly unsupported. Her organization, which advocates on behalf of autistic people and their families, is facing increasing pressure to fill that void, she said.

“We’ve started to do programming for adults, but we weren’t ready for it,” she said. “I don’t think we’re ready today for these children that are going to grow up and be seniors. We’re behind the eight ball, and that’s why we need to be better prepared for these senior years.”

Better preparation includes developing more diagnostic tools, Stoddart said, adding there are few options available to help medical practitioners identify adults with autism later in life.

He said the think tank heard it’s common for autistic adults to be wrongly diagnosed with a different condition and receive incorrect or inappropriate treatments, noting the phenomenon seems to be more common for autistic women.

Autistic people consulted in the report said they fear assisted-living facilities or other supports they may need post-retirement may not understand or accommodate their needs.

The think tank’s report also highlighted the fact that autistics with co-occurring conditions may struggle to communicate the exact nature of their pain or other symptoms, resulting in medical professionals misinterpreting their behaviours.

“More research is needed on how co-occurring medical conditions contribute to behaviour and experiences, and how this changes with age, thus shifting the focus from behaviour management to the biological causes of behaviour,” the report said.

Stoddart said much of the present-day research focused on aging has not looked specifically at autistic populations and called on academics to start focusing more attention on the demographic.

The message was similar for policy and program developers, but with one specific caveat — ensure autistic people from all across the spectrum are actively consulted.

“We’ve excluded people with autism consistently from conversations about research and provision of services,” Stoddart said. “That needs to change.”

That sentiment was echoed by autistic advocates who weren’t involved in the report.

Vivian Ly of Canadian Autistics United said the conversation the think tank is promoting is necessary and “a long time coming.”

Ly praised the group’s emphasis on wider inclusion, saying it may help steer dialogue away from avenues the autistic community has felt uncomfortable with.

“Rhetoric about finding a cure for autism is concerning,” Ly said, noting such conversations make false assumptions about the value of autistic people’s lives. “My hope is that researchers move away from curing autism and move towards supporting autistic people in living full, authentic lives.”

Ly also urged anyone taking up the think tank’s call to action to be sure to include autistic people from all walks of life, genders and ethnic backgrounds.